quality of life of caregivers of patients with intractable epilepsy

3
developing countries publish their work in journals not indexed in MEDLINE for different reasons (Gibbs, 1995). Furthermore, the complete data extraction was per- formed by only one person, whereas a second person re-extracted data from only a sample of half of the studies instead of all of them. With two or more people participat- ing as guards against errors, and if there is good agreement beyond chance between reviewers, the clinician can have more confidence in the results of the systematic review (Guyatt & Jaeschke, 2008). ACKNOWLEDGMENT I confirm that I have read the Journals position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. Disclosure: The author declares no conflicts of interest. Jorge G. Burneo [email protected] University of Western Ontario London, Canada REFERENCES Gibbs WW. (1995) Lost science in the Third World. Sci Am 273:92–99. Guyatt GH, Jaeschke R. et al. (2008) Summarizing the evidence. Users' guide to the medical literature. McGraw Hill, Chicago, pp. 523–542. Mbuba CK, Ngugi AK, Newton CR, Carter JA. (2008) The epilepsy treat- ment gap in developing countries: a systematic review of the magni- tude, causes, and intervention strategies. Epilepsia 49:1491–1503. Quality of life of caregivers of patients with intractable epilepsy To the Editors: About 25% of epilepsy is intractable and may require epilepsy surgery. However, up to 30% of patients undergo- ing presurgical evaluations eventually do not qualify for surgery (Berg et al., 2003) and face the prospect of ongoing seizures. Epilepsy reduces quality of life (QoL) of patients (Baker et al., 1997), but may also influence QoL of people caring for them. We studied whether QoL of caregivers of adults with intractable epilepsy was reduced and which factors accounted for this. Questionnaires were sent to 63 patients ineligible for epilepsy surgery (>16 years old, IQ > 80; Zijlmans et al., 2007) and their main caregivers. Demographic and seizure information was obtained. Caregivers expressed burden of care on a Visually Aided Scale (VAS; 0–100%), compared to what they imagined life would be like without the patients epilepsy. Both patients and caregivers were administered two generic, validated questionnaires, the EuroQol (EQ5D) (resulting in a utility score and a general QoL-VAS-score) and the Rand 36-item Health Survey (RAND-36). The RAND-36 covers eight domains, summarized in two main scores: a mental (MCS) and a physical component score (PCS). EQ5D utility scores were compared to the Dutch popu- lation (Hoeymans et al., 2005). Age-matching was not pos- sible. Results from RAND-36 (Ware & Ksoinksi, 2001) were compared to the age-matched Dutch population Table 1. Clinical and demographic characteristics of patients and caregivers Patients (N = 37) Caregivers (N = 37) Epilepsy characteristics Mean duration of epilepsy in years 27 (range: 8–52) Seizure frequency last 2 years Median (/month) 5 (range: 0–150) Seizure free (%) 3 <1/month (%) 8 1 or more/month (%) 89 of which daily (%) 19 Using >1 antiepileptic drug (%) 89 Experiencing adverse side effects of antiepileptic drugs (%) 64 Demographic characteristics Mean age in years 39 (range: 20–66) 46 (range: 24–68) Female (%) 46 60 Paid employment (%) 46 Relationship to patient (%) Partner 60 Parent 32 Other 8 Cohabiting (%) 76 76 Hours of care given per week (mean) 10 GRAY MATTERS Epilepsia, 50(5):1289–1300, 2009 1294

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Page 1: Quality of life of caregivers of patients with intractable epilepsy

developing countries publish their work in journals notindexed in MEDLINE for different reasons (Gibbs, 1995).

Furthermore, the complete data extraction was per-formed by only one person, whereas a second personre-extracted data from only a sample of half of the studiesinstead of all of them. With two or more people participat-ing as guards against errors, and if there is good agreementbeyond chance between reviewers, the clinician can havemore confidence in the results of the systematic review(Guyatt & Jaeschke, 2008).

ACKNOWLEDGMENT

I confirm that I have read the Journal’s position on issues involved inethical publication and affirm that this report is consistent with thoseguidelines.

Disclosure: The author declares no conflicts of interest.

Jorge G. [email protected]

University of Western OntarioLondon, Canada

REFERENCES

Gibbs WW. (1995) Lost science in the Third World. Sci Am 273:92–99.Guyatt GH, Jaeschke R. et al. (2008) Summarizing the evidence. Users'

guide to the medical literature. McGraw Hill, Chicago, pp. 523–542.Mbuba CK, Ngugi AK, Newton CR, Carter JA. (2008) The epilepsy treat-

ment gap in developing countries: a systematic review of the magni-tude, causes, and intervention strategies. Epilepsia 49:1491–1503.

Quality of life of caregivers of patients withintractable epilepsy

To the Editors:About 25% of epilepsy is intractable and may require

epilepsy surgery. However, up to 30% of patients undergo-ing presurgical evaluations eventually do not qualify forsurgery (Berg et al., 2003) and face the prospect of ongoingseizures. Epilepsy reduces quality of life (QoL) of patients(Baker et al., 1997), but may also influence QoL of peoplecaring for them. We studied whether QoL of caregivers ofadults with intractable epilepsy was reduced and whichfactors accounted for this.

Questionnaires were sent to 63 patients ineligible forepilepsy surgery (>16 years old, IQ > 80; Zijlmans et al.,2007) and their main caregivers. Demographic and seizureinformation was obtained. Caregivers expressed burden ofcare on a Visually Aided Scale (VAS; 0–100%), comparedto what they imagined life would be like without thepatient’s epilepsy. Both patients and caregivers wereadministered two generic, validated questionnaires, theEuroQol (EQ5D) (resulting in a utility score and a generalQoL-VAS-score) and the Rand 36-item Health Survey(RAND-36). The RAND-36 covers eight domains,

summarized in two main scores: a mental (MCS) and aphysical component score (PCS).

EQ5D utility scores were compared to the Dutch popu-lation (Hoeymans et al., 2005). Age-matching was not pos-sible. Results from RAND-36 (Ware & Ksoinksi, 2001)were compared to the age-matched Dutch population

Table 1. Clinical and demographic

characteristics of patients and caregivers

Patients (N = 37) Caregivers (N = 37)

Epilepsy characteristics

Mean duration of

epilepsy in years

27 (range: 8–52)

Seizure frequency last

2 years

Median (/month) 5 (range: 0–150)

Seizure free (%) 3

<1/month (%) 8

1 or more/month (%) 89

of which daily (%) 19

Using >1 antiepileptic

drug (%)

89

Experiencing adverse side

effects of antiepileptic

drugs (%)

64

Demographic characteristics

Mean age in years 39 (range: 20–66) 46 (range: 24–68)

Female (%) 46 60

Paid employment (%) 46

Relationship to patient (%)

Partner 60

Parent 32

Other 8

Cohabiting (%) 76 76

Hours of care given per

week (mean)

10

GRAY MATTERS

Epilepsia, 50(5):1289–1300, 2009 1294

Page 2: Quality of life of caregivers of patients with intractable epilepsy

(Aaronson et al., 1998). The effects on the caregivers’MCS of seizure frequency (median and below vs. abovemedian), patients’ MCS (likewise), employment status,and burden of care VAS-score were studied. Comparisonswere by two-tailed t-test or Mann-Whitney U test.

Thirth-seven patients and caregivers responded(Table 1). EQ5D utility-score of patients was significantlyreduced (0.80 vs. 0.88; p = 0.04; QoL-VAS 72%) and ofcaregivers possibly reduced (0.83 vs. 0.88; p = 0.30; QoL-VAS 80%) compared to Dutch population. Patients’RAND-36 scores were lower on MCS, PCS, role physical()38 points), social functioning ()15), mental health()13), vitality ()20), and general health ()18).

Caregivers of patients with intractable epilepsy scoredlow on vitality ()13 points; Fig. 1) and seemed to havereduced mental well-being (MCS )3 points, p = 0.07).This was not influenced by the patients’ mental well-being,seizure frequency, or employment status. There was an

Figure 2.

Effect of patient characteristics and burden of care (up and including median vs. above median) on mental component

score of caregivers. The lines represent median and quartile scores. Caregiver’s MCS was not influenced by the

patients’ mental well-being, seizure frequency, or employment status. There was a possible association with self-

reported high burden of care (p = 0.07).

Epilepsia ILAE

Figure 1.

Proportional difference of SF-36 scores of patients

(blue squares) and caregivers (orange squares) from the

average Dutch population (Aaronson et al., 1998).

Positive scores represent better scores. Significantly

different caregiver scores (p < 0.05) are marked with

an asterisk. A significant difference was found for

patients on the MCS, the PCS, and the domains: social

functioning ()15 points), mental health ()13 points),

vitality ()20 points), general health ()18 points), and

role physical ()38 points). This last domain describes

experienced physical restriction in reaching goals in life.

A significant difference was found for caregivers on the

vitality domain ()13 points) and a near significant differ-

ence for the MCS ()3 points; p = 0.07).

Epilepsia ILAE

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GRAY MATTERS

Epilepsia, 50(5):1289–1300, 20091295

Page 3: Quality of life of caregivers of patients with intractable epilepsy

association, however, with self-reported high burden ofcare (Fig. 2), suggesting that individual coping style is adeterminant factor in the mental health of caregivers.

Sample size was small, and our results should beconfirmed in a larger group. EQ5D-scores were probablyflattering in this relatively young group, as age adjustmentwas not possible. Our patients were well motivated to pursueepilepsy surgery, which may have biased the results towardcertain personality characteristics. This limits extrapolation.In clinical care, the well-being of caregivers should beconsidered. Interventions could focus on individual copingstyle. We recommend support groups or counseling for care-givers of patients with intractable epilepsy.

ACKNOWLEDGMENTS

We thank all patients and caregivers who participated in this study. Wealso thank Chad Gundy and Neil Aaronson from the Netherlands CancerInstitute for providing us with extensive data of Dutch population scoreson the RAND-36.

The study was financially supported by the Netherlands Organization forScientific Research (NOW), grant no. 945-05-039.

We confirm that we have read the Journal’s position on issues involved inethical publication and affirm that this report is consistent with thoseguidelines.

Disclosure: None of the authors has any conflict of interest to disclose.

Judith van Andel1

Maeike Zijlmans1

[email protected] Fischer2

Frans S. S. Leijten1

1Dept. of Neurology and Clinical Neurophysiology,Rudolf Magnus Institute of Neuroscience,

University Medical Centre Utrecht, Utrecht,The Netherlands

2Julius Center for Health Sciences and Primary Care,University Medical Centre Utrecht, Utrecht,

The Netherlands

REFERENCES

Aaronson NK, Muller M, Cohoen PD, Essink-Bot M-L, Fekkes M,Sanderman R, Sprangers MAG, Velde te A, Verrips E. (1998) Trans-lation, validation and norming of the Dutch language version of theRAND-36 health survey in community and chronic disease popula-tions. J Clin Epidemiol 51(11):1055–1068.

Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. (1997) Quality of lifeof people with epilepsy: a European study. Epilepsia 38(3):353–362.

Berg TA, Vickrey BG, Langfitt JT, Sperling MR, Walxzak TS, Shinnar S,Bazil CW, Pacia SV, Spencer SS. (2003) The multicenter study ofepilepsy surgery: recruitment and selection for surgery. Epilepsia44(11):1425–1433.

Hoeymans N, Lindert van H, Westert GP. (2005) The health status of theDutch population as assessed by the EQ-6D. Qual Life Res 14:655–663.

Ware JE, Ksoinksi M. (2001) The RAND-36 physical and mental healthsummary scales: a manual for users version 1. 2nd ed. Qualimetric,Lincoln.

Zijlmans M, Buskens E, Hersevoort M, Huiskamp G, Huffelen van AC,Leijten FSS. (2007) Should we reconsider epilepsy surgery? Themotivation of patients once rejected. Seizure. Published online:4-Dec-2007; doi: 10.1016/j.seizure.2007.10.006.

Knowledge, attitudes, and practice ofCameroonian medical students and

graduating physicians with respect toepilepsy

Health professionals need to be aware of their patients’beliefs about illness, and alternative treatment options thatpatients may choose (Sands & Zalkind, 1972). This need iseven greater when it concerns highly prevalent and stigma-tizing diseases such as epilepsy. Epilepsy is a major publichealth problem in Cameroon, with some areas havingprevalence rates as high as 6% (Dongmo et al., 2000;Njamnshi et al., 2005). We have recently found that sec-ondary school students in Batibo, a rural area in Cameroon,have a fairly good knowledge of epilepsy and, therefore,could serve as appropriate channels of education for thegeneral public in order to increase awareness and reducestigma in epilepsy (Njamnshi et al., 2008). Furthermore,the human resources needed for optimal epilepsy care pro-vision do not match the demand in developing countrieslike Cameroon [World Health Organisation-World Federa-tion of Neurology (WHO-WFN), 2004]. Therefore, medi-cal students and young physicians in Cameroon need to beadequately educated about the beliefs and practices con-cerning epilepsy, given that perceptions are influenced byculture and traditional beliefs. An understanding of suchbeliefs and practices among medical students and youngphysicians themselves is an essential first step for theimprovement of epilepsy education in medical schools inCameroon. Studies in Brazil (Fonseca et al., 2004) and

Table 1. Demographic characteristics of the

377 study participants in the FMBS*

Number Percentage

Age (years)

<20 119 31.6

‡20 258 68.4

Sex

Female 165 43.9

Male 212 56.1

Level of education

Preclinical (Year 1–3) 160 42.4

Clinical (Year 4–7) 150 39.8

Physicians (just graduated) 67 17.8

*The Faculty of Medicine and Biomedical Sciences (FMBS) has

an undergraduate student population of 650, and was the only

medical school in the country at the time of the study in 2006.

The first 3 years of training are preclinical; the fourth to the

sixth are the clinical years, whereas the seventh year is reserved

for the MD research project. All students speak French and/or

English.

GRAY MATTERS

Epilepsia, 50(5):1289–1300, 2009 1296